Empowered Patient Archives

#patientchat Highlights: Healthcare Trends: Are They Here to Stay?

Last week we hosted a “Healthcare Trends: Are They Here to Stay?” #patientchat. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Health Equity


Telehealth


Lack of Access


Full Transcript

#patientchat Highlights: Ask Me Anything (AMA) with Marie Ennis-O’Connor

Last week we hosted an “Ask Me Anything (AMA)” Empowered #patientchat with Marie Ennis-O’Connor (@JBBC) where she answered everyone’s pressing questions about social media. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Learn How to Create Professional Graphics


“Sharing can be used as medicine, mental health support, a tool to raise ur quality of life”


Practical information presented in human-centered language


Full Transcript

#patientchat Highlights: Genome-Wide Sequencing: What an Empowered Patient Needs to Know

Last week we hosted an Empowered #patientchat with GenCOUNSEL (@GenCOUNSEL_CA) titled “Genome-Wide Sequencing: What an Empowered Patient Needs to Know”. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

“Genetic counselors help patients know what they’re dealing with.”

Genetic Counseling Helps Patients and Families Feel More Empowered

What can stakeholders do to make genome-wide sequencing and genetics services more equitable and diverse?


Full Transcript

#patientchat Highlights: Vaccine Hesitancy: Let’s Talk About It

Last week we hosted a “Vaccine Hesitancy: Let’s Talk About It” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Concerns from Chronic Patients

“People are afraid of what they don’t understand.”

Coordinate Efforts with Community Leaders


Full Transcript

#patientchat Highlights: The Engaged Patient: Utilizing Digital Health

Last week we hosted a “The Engaged Patient: Utilizing Digital Health” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Shared Decision Making is Key

Advocate for Access and Equity

The Patient is a Respected Member of their Care Team


Full Transcript

#patientchat Highlights: A Year in Review: Looking back on 2020 and Ahead to 2021

Last week we hosted a “A Year in Review: Looking back on 2020 and Ahead to 2021” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

No regrets

“Spread the love”

How can we empower others?


Full Transcript

#patientchat Highlights: Checking the Pulse on Patient Influencers

Last week we hosted a “Checking the Pulse on Patient Influencers” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Patient Advocate/Activist Over Influencer

“Supporting patients (regardless of approach) is paramount”

What is a patient influencer?


Full Transcript

#patientchat Highlights Open Mic

Last week we hosted an “Open Mic” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Burnout is Real

“We already have the power”

Shining a Light on Passionate Causes


Full Transcript

Open Mic #patientchat Highlights

Last week we hosted an “Open Mic” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Appreciate the Little Things

Help Others

“Normal is a dryer setting”

Full Transcript

Past Patient Chats

2021

2020

2019

2018

2017

2016

  • December 23, 2016 & January 6, 2017: No Patient Chat due to Holidays
  • December 9, 2016: Looking Back… Looking Ahead… Empowered #patientchat
  • November 25, 2016: No Patient Chat this week due to Thanksgiving holiday (U.S.)
  • November 11, 2016: “Health Share” Empowered #patientchat
  • November 6, 2016: Popup #patientchat – Hacking Healthcare with @TheBigHeist: Open Enrollment & DPC
  • October 28, 2016: No Chat
  • October 21, 2016 (re-scheduled from 10/14): Whole Health & Wellness with @justagoodlife
  • October 6, 2016: Popup #patientchat – Health Awareness Days
  • September 30, 2016: Flipping the Wait #MedX
  • September 16, 2016: Mental Health and Chronic Disease #MedX
  • September 2, 2016: No Patient Chat this week due to Labor Day Holiday Weekend (U.S.)
  • August 19, 2016: An Integrative Medicine Primer with a Holistic Nurse
  • August 5, 2016: Quality of Life – Define it. Share it. Live it. with Alan Brewington
  • July 22, 2016: Finding Help in the Healthcare Maze – Where to Start
  • July 10, 2016: Popup #patientchat – Medical Trauma
  • July 8, 2016: No Chat
  • June 26, 2016: Popup #patientchat – “The Open Patient” Documentary Discussion and Chat with @TheLizArmy @StevenKeating
  • June 24, 2016: No Chat
  • June 10, 2016: Citizen Science: Hacking Healthcare with John Novack @teaminspire
  • June 5, 2016: Popup #patientchat – How to Take Charge of your Medical Information with Richard Kreis
  • May 27, 2016: No Patient Chat this week due to Memorial Day Holiday Weekend (U.S.)
  • May 13, 2016: How to Create Work-Life Harmony with Chronic Disease
  • April 29, 2016: No Chat
  • April 22, 2016: Getting to the Heart of Patient-Centered Care with Dr. Rob Lamberts
  • April 15, 2016: No Chat
  • April 1, 2016: How to Communicate with Your Healthcare Team
  • March 18, 2016: How to Be Your Own Best Advocate with Patient Empowerment Network (@power4patients)
  • March 4, 2016: Rare Disease Advocacy with @RareCandace
  • February 19, 2016: Using Technology for Emotional Support, with CanSurround
  • February 5, 2016: Adjusting to a Family Member’s Diagnosis #patientchat with @caregiving
  • January 31, 2016: #popup #patientchat – How do we empower more people in their health?
  • January 22, 2016: Who’s in Your Corner? – Building Your Healthcare Team, Empowered #patientchat
  • January 8, 2016: Empowered #patientchat – Self-care Goals

2015

  • December 25, 2015: No Patient Chat this week due to Holidays
  • December 11, 2015: The Empowered Patient Year in Review
  • November 27, 2015: No Patient Chat this week due to Thanksgiving holiday
  • November 13, 2015: Tips for Improved Patient/Doctor Communication with Edward Leigh, MA
  • October 30, 2015: Empowered #PatientChat with Devices for Dignity
  • October 16, 2015: Tools to take charge of your health
  • September 25, 2015: Live from medx  (off-schedule due to Stanford Medicine X Conference)
  • September 4, 2015: Patient Experience with CancerGeek and Dr. Gia Sison
  • August 21, 2015: Talking telehealth
  • August 7, 2015: How do we empower more people in their health?
  • July 24, 2015: Challenges in scheduling medical visits?!
  • July 10, 2015: Getting your healthcare records organized
  • June 26, 2015: Where can I get the latest science that matters to me? with Tal Givoly of Medivizor
  • June 12, 2015: How patients can get involved in research & trials with special guest Anne Marie Ciccarella
  • May 29, 2015: Why are patient stories important?
  • May 15, 2015: How to coordinate care when you have more than one doctor
  • May 1, 2015: Empowered #PatientChat with Flip the Clinic
  • April 3, 2015: Tending to your mental health with special guest Kati Morton, LMFT
  • March 20, 2015: Patient Chat with Grant Perry of PatientPilot
  • March 6, 2015: How can you speak up and be heard at a doctor’s visit?
  • February 20, 2015: Family Caregivers and Patients Facing End of Life Together with Denise Brown of Caregiving.com
  • February 6, 2015: How can we hack the waiting room?
  • January 23, 2015: Online Support Groups: How can they help?” with Dr. Vincent Caimano
  • December 26, 2014 & January 9, 2015: No Patient Chat due to Holidays
  • December 12, 2014 at 10am PT: John Novack from Inspire, Using social networks to improve your health
  • November 28, 2014: No Patient Chat this week due to Thanksgiving holiday
  • November 14, 2014: Dr. Goldina Erowele Founder, CareNovate Brands
  • October 31, 2014: Martine Ehrenclou, M.A., Author of “The Take-Charge Patient: How You Can Get The Best Medical Care” CHAT TRANSCRIPT HERE
  • October 17, 2014: What is an #epatient and why should I care? epatient101.com
  • October 3, 2014: How to Find a Quality Doctor (topic inspired by this AP-Norc poll)
  • September 19, 2014: “How to Make Meaningful Doctor & Patient Connections Online” with Lisa Johnson from Sermo.com, “#1 physicians’ social network in the US” CHAT TRANSCRIPT HERE
  • September 5, 2014 at 10am PT: “Live from MedX” with Emily Lu
  • August 22, 2014 at 10am PST: “Storytelling for Healing: How Sharing your Story Helps” with special guest Amy Ohm from TreatmentDiaries.com Chat details here  CHAT TRANSCRIPT HERE
  • August 8, 2014 at 10am PST: “Hospital Stays the #epatient Way”  with special guest #epatient Mark-John Clifford of Health in the Laugh Lane – CHAT TRANSCRIPT HERE
  • July 25, 2014: Empowering Women to Improve their Gynecologic Health featuring Dee & Christina from Gyn Cancer (#gyncsm) @gyncsm – CHAT TRANSCRIPT HERE
  • July 11, 2014: Overcoming Challenges in Requesting Past Medical Records
  • June 25, 2014: Talking to Your Doctor  featuring Zack Berger, MD, PhD
  • June 13, 2014: Building a Healthcare Team
  • May 30, 2014: Working with Your Caregiver to Create a Plan that Works
  • May 16, 2014: How does an empowered patient approach prevention?
  • May 2, 2014: I’ve decided to become an empowered patient. Now what?
  • April 18, 2014: How to Create Patient-Centered Technology featuring Jack Imaging 

Facing Acute Myeloid Leukemia: Notes from a Survivor

In the spring of 2016, I was looking forward to a final year of teaching sociology before a retirement promising new adventures.  I felt great and had no reason to think I had any health problems.  When my doctor suggested some routine blood work, I readily complied.  When the results showed abnormally low white blood cell counts and he recommended a hematologist, I readily complied. When the hematologist ordered a bone marrow biopsy, I still readily complied.  When the results came in, my life changed forever.

The biopsy revealed that I had acute myeloid leukemia. Since this disease can kill within months, they recommended immediate treatment. The next day I checked into a hospital and started chemotherapy.  I received the standard treatment for this disease for the preceding 40 years: a “7 + 3” cocktail of cytarabine and idarubicin.  I spent five and a half weeks in the hospital dealing with various infections brought on by immunosuppression and patiently waiting for my blood counts to recover. As they did, I received the best possible news. The chemotherapy had achieved a temporary remission that bought me time to explore my options for longer term treatment.

As I awaited the molecular and cytogenic data on my cancer, I was told to expect two possibilities.  If there was a relatively low risk of relapse, I might get by with additional chemotherapy. If there was a high risk of relapse, a stem cell transplant was in order. When the results placed me in an intermediate risk category, I had a tough choice to make. After researching my options, getting second opinions, gathering advice, and reading my doctor’s cues, I settled on the transplant.  My logic was that if I opted for more chemo and it didn’t work out, I would deeply regret not having the transplant.  If I had the transplant and it didn’t work out, at least I would feel as if I gave it my best shot and it just wasn’t meant to be. Despite the 15-20% mortality rate from the transplant itself, I was at peace with my decision to proceed.

My benefactors were two anonymous sets of parents who had donated their newborn infants’ umbilical cords to a transplant bank.  Once we found two good matches, the cords were shipped to my transplant hospital, the cord blood was extracted, and it was transfused into my bloodstream. These stem cells just “knew” where to go to engraft in my bone marrow and begin producing a healthy new immune system.  For the second time, I received the best possible news. Three weeks after transplant, one of my donor’s cells were 99% engrafted. With that result, I returned home for a prolonged recovery.

For the next few weeks, I faced daily clinic visits, blood tests, transfusions of platelets and red blood cells, growth factor injections, and lingering effects of my conditioning chemotherapy and radiation as well as the engraftment process itself. As the weeks turned into months, my recovery proceeded apace.  It eventually became clear that I could claim the best possible news for the third time, as my new cells and old body got along with each other and there was no evidence of graft-vs.-host disease.  Looking back over the entire process, my oncologist summarized it by saying “this is as good as it gets.”

Many people wanted to give me credit for surviving this disease. While it is tempting to claim such credit, I remain agnostic about whether anything I did had a material effect on my positive outcome. I think my survival was largely a matter of luck, chance, and random variation across AML patients. Nonetheless, there were several practices I engaged in throughout my treatment that deserve mention. At the very least, they brought me peace during a difficult time. And at the most, they may indeed have contributed to a positive outcome for which I am eternally grateful.

The first set of practices that sustained me was mindfulness, meditation and yoga.  To the greatest extent possible, these practices helped me let go of ruminations about the past or fears about the future and focus on the present moment.  Focusing on my breathing kept me centered as – like my breaths – each moment flowed into the next.  Maintaining a non-judgmental awareness and acceptance of each passing moment kept my psyche on an even keel.

Rather than extended periods of formal meditation, I simply sought a mindful awareness of each moment, hour, day and week.  I also went through a daily yoga routine even while receiving chemotherapy. Doing so helped me retain my identity as I weathered the toxic treatment and its inevitable side-effects.  In the evenings, I used a technique called a body scan to relax and prepare me for a peaceful sleep. The cumulative effect of these practices was a calm acceptance of circumstances I could not change alongside a serene hope that all would work out for the best.

A second practice involved being a proactive patient.  Perhaps it was my training as a social scientist that allowed me to bring an analytical curiosity to my disease and the treatments my doctors were deploying. I asked lots of questions during their all too brief visits, and they patiently responded to all my queries.

On several occasions, my proactive stance made a positive contribution to my treatment.  When I developed a nasty, full body rash, it took a collaborative conversation between me, my oncologist, and infectious disease doctors to isolate the one drug among so many that was the culprit. I identified it, they switched it out, and the rash abated. On another occasion, I was able to identify two drugs that were causing an unpleasant interaction effect.  I suggested changing the dosing schedule, they concurred, and the problem resolved.  The sense of efficacy I received from this proactive stance also helped me retain a positive mood and hopeful stance during my prolonged treatment.

A third practice involved maintaining a regimen of physical activity.  During my first, five-week hospital stay, I felt compelled to move and get out of my room for both physical and social reasons.  I developed a routine of walking the halls three times a day, trailing my IV pole behind me.  They tell me I was walking roughly 5 miles a day, and every excursion felt like it was keeping my disease at bay and connecting me with all the nurses and staff members I would encounter as I made my rounds.

When I moved to my transplant hospital, I was confined to my room but requested a treadmill that met the physical need for activity even as I sacrificed the social benefits of roaming the halls.  But throughout both hospital stays and later at home, I maintained stretching activities, exercise workouts, physical therapy routines, and yoga to keep my body as active and engaged as my circumstances would allow. These activities also gave me a welcome sense of efficacy and control.

A fourth practice involved maintaining my sense of humor.  I have always appreciated a wide variety of humor, ranging from bad jokes, puns and double entendre to witty anecdotes and stories to philosophical musings.  Cancer is anything buy funny, which is precisely why humor has the power to break through the somber mood and fatalistic worldview that so often accompanies the disease.  Using humor became another way of keeping the cancer at bay.  It was a way of saying you may make me sick and eventually kill me, but I’m still going to enjoy a good laugh and a bad joke along the way.

Alongside these practices I could control, there were also beneficial circumstances beyond my control that worked in my favor.  These included the privilege of being a well-educated white male that led to my being treated respectfully and taken seriously by all my health care providers.  In addition, my doctors and nurses consistently combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay. And finally, my privileged status and excellent care played out against a backdrop of strong social support from a dense network of family, friends, colleagues and neighbors.

A final practice that integrated everything else was writing my story as it unfolded. Upon my first hospitalization, I began sending emails to an ever-expanding group of recipients documenting and reflecting upon my disease, treatment and recovery.  Narrating my story for others required me to make sense of it for myself.  The ostensible goal of keeping others informed became a powerful therapeutic prod for my own understanding of what was going on around me and to me.  While my doctors’ ministrations cured my body, my writing preserved my sense of self and a coherent identity.

I eventually sent over 60 lengthy reports to a group of roughly 50 recipients over a 16-month period.  This writing would eventually serve three purposes.  It was a sense-making procedure for me. It was a communication vehicle with my correspondents. And finally, I realized it could be a resource for others in the broader cancer community. With that insight, I did some additional writing about lessons learned and identity transformations and published the resulting account.

As I mentioned at the start, I will never know if any of these practices or circumstances made a material contribution to my survival.  But they maintained my sanity and preserved my identity during the most challenging experience of my life. Regardless of the eventual endings of our journeys, sustaining and nurturing ourselves along the way is a worthy goal in itself.



 

Patient Advocacy: Ten Tips to Develop a Stronger Social Media Presence

Social media is a powerful addition to our patient advocacy toolbox. We can use it to raise awareness of our cause, build a community of supporters, promote our key messages and highlight our patient advocacy activities. To help you strengthen your online presence and create more visibility for your cause, I’ve put together this list of ten actionable tips you can put into practice right away.

1. Optimize Your Social Profiles

Your social media profile should be considered a key element of your advocacy brand. What will people’s first impression be of you when they encounter your online profile? What might make them decide to follow you?   Review each of your existing social profiles with the following points in mind.

  • Is it time to use a more professional picture to represent yourself online? Upload an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo. Make sure to upload images with the correct dimensions for each social platform (check out this guide to social media image sizes).
  • You have an opportunity to personalize your profile on Facebook and Twitter by uploading a custom header image. Use this opportunity to bring more authenticity to your account, for example you might use a picture of yourself holding a sign with a hard-hitting message. Or perhaps there’s a project or campaign you are currently working on. If so, include an image to represent this in the header space.

Take Action: Complete all sections of your profile to convey a stronger message and identity.  Schedule a review date every few months to check your information is still current.

2. Focus on Being the Expert One Platform at a Time

Each year brings shiny new social media tools and new features for existing tools. It’s tempting to jump on board the latest social media platform with the aim of being everywhere at once; but rather than spreading yourself too thinly, focus on mastering one or two platforms really well before moving on to the next one.

Take Action: Look back on the past six months and ask yourself which social media platform worked best for you? Which gave you the most engagement? And which platform had the least engagement? Consider focussing your efforts on the high-performing platform and becoming known as the go-to expert on this channel before adding anything new to your social media mix.

3. Schedule Your Social Media Posts

The internet is global and if you want your message to reach further than your own backyard, you need to hit multiple time zones. Tweets have the shortest lifespan of any social media post. Even though the latest Twitter algorithm means that posts are no longer displayed chronologically, Twitter is fast-paced, and messages get buried quickly. To counter this, you need to share your post multiple times on Twitter to increase visibility. Scheduling tweets allows you to reach followers when they are most likely to be online (even if you aren’t there at the same time) and allows you to maintain a regular and consistent online presence.

Take Action: Use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often. Don’t just post the same update every time. Vary your updates by changing around the headline, highlighting a statistic or quotation or adding different images.

4. Curate Content

The ability to curate credible content to share with our communities is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman believes “patient advocates not only have a responsibility to curate trusted content but that it is an imperative if you are even going to be calling yourself a patient advocate.”

Content curation is defined as the process of gathering information relevant to a particular topic or area of interest.  While this definition sounds simple, there’s a world of difference between simply gathering information and being an effective curator. A good curator knows how to find, aggregate, and synthesize reliable information, putting it into context for their communities and sharing it in a format that is easy to access and understand.

Take Action:  Set up Google Alerts for the healthcare topics of interest to you.  Google Scholar is also useful as it indexes most peer-reviewed online journals of Europe and America’s largest scholarly publishers.

5. Create Visual Impact

You’ve surely heard this before, but it’s worth reiterating: images matter — a lot. In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand, and retain more information more quickly.

Visual content is 40x more likely to get shared on social media than other types of content according to research by Buffer. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes and GIFs.

Take Action: Add an image to all your online posts — even those that are text-based. Create a strong visual identity and maintain consistency across all your images by sticking to the same colours, fonts, and layouts. Read How To Create Professional GraphicsEven If Youre Not a Graphic Designer for more tips.

6. Use Relevant Hashtags

Hashtags are a powerful way to increase your visibility on social media. According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies).  Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”

Take Action: Visit symplur.com to find the relevant hashtags for your disease area. If you can’t find a hashtag related to your topic, you might consider creating your own. For more information on using hashtags strategically read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

7. Live-Report Conferences and Events

Reporting live from an event is a way of engaging your followers by sending updates about an event as it occurs. It allows you to expand the reach of in-person events to provide valuable insights to those who are unable to attend in person. It’s also a way to increase your visibility as an attendee and enhance your credibility.

Live reporting tools include live-streaming using Facebook LiveInstagram Live, and Periscope (Twitter’s live-streaming app).  You can also share posts to your Facebook page and share photos and video clips via Instagram and Snapchat during the event.

Take Action: Read The Advocate’s Guide to Reporting Live from Conferences and Events for more tips on live-reporting.

8. Take Part In Twitter Chats

Twitter thrives on its community and the more you connect with other users the more quickly you will grow your own following. Joining a Twitter chat is a super way to connect and engage. When you attend a Twitter chat regularly, people will get to know you and in this way, you can quickly develop and grow your own network of supporters.  If you’re not familiar with them, a Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it.

Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.

Take Action: There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. And “if you can’t find a tweet chat you enjoy,” recommends patient advocate, Annette McKinnon, “start a new one, register it @symplur and build a new community.”

9. Create a YouTube Channel

People engage with video more than any other form of content (written, audio, images, etc.). YouTube with more than 1.8 billion monthly active users remains the online video leader. 4 million YouTube videos are viewed every day, and the average session duration of 9 minutes and 28 seconds. That’s more than many other social networks.

Take Action: While producing your own video may seem daunting, video creation has never been more accessible through smartphones.  You can also create simple videos for your channel using free tools such as Adobe Spark and Lumen5 (see my YouTube channel for examples of Lumen5 videos).

10. Maintain a Consistent Content Creation and Promotion Schedule

Social media is an ongoing commitment. You need to post consistently to stay in front of your audience’s eyes and keep growing.  One key to maintaining a steady stream of quality content is to re-purpose what you already have. Check your blog’s analytics (or Twitter and Facebook analytics) to see the most popular posts you’ve written or shared.  Can you expand on these to include new research or thinking? Perhaps the content can be turned into an infographic or a slide-deck.

Take Action: Set aside one day each month to map out upcoming cause awareness days. Then use a simple excel spread sheet to create a calendar for social media postings. Include relevant hashtags and images.  A content calendar helps you maintain a consistent content production schedule, enabling you to plan for seasonal content, and annual campaigns.

Social media is an ever-evolving and fast-moving field, and with so much to learn and do, it’s easy to feel overwhelmed. You don’t have to implement all these tips at once. Try adding one new strategy to your social media plan each week and measure its impact at the end of each month. This way you will know which of these strategies are moving you closer to a stronger online presence.

Here’s to your social media success!

 

Advice For Newly Diagnosed Patients #patientchat Highlights

Last week, we hosted an Empowered #patientchat on advice for newly diagnosed patients. The #patientchat community came together and shared their best advice and tips.

The Top Tweets and Advice…

 

Ask Questions

 

 

 

 

Seek a Second Opinion

 

 

 

 

Stay Informed


Full Chat

Finding Your Voice #patientchat Highlights

Last week, we hosted an Empowered #patientchat on finding your voice and what stops patients from seeking a second opinion.

A second opinion is crucial to prevent misdiagnosis or unnecessary procedures or surgeries. A study done by Mayo Clinic showed that as many as 88% of patients who get a second opinion go home with a new or refined diagnosis. That shows that only 12% of patients receive confirmation that their original diagnosis was complete and correct. Still, a lot of patients never get second opinions. So, we wanted to chat about this and see what the Empowered #patientchat community had to say, and these were the main takeaways:

The Top Tweets…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Full Chat

Tips on Finding a New Job or Changing Career after Cancer Treatment

In this three-part series, I’ve been exploring different aspects of returning (or continuing) to work after a cancer diagnosis. So far I’ve tackled issues from preparing to return to work and handling your workload, to dealing with problems such as fatigue and concentration.  In the final part of this series, I’m turning my attention to finding a new job after cancer treatment has ended.

There are a number of reasons why you might be looking for a new job after cancer. Perhaps you crave a fresh start, somewhere where you’re not known as the co-worker with cancer.  Or perhaps you need more work flexibility – such as the option to work part-time –  but your current employer isn’t in a position to make the adjustments you need. Or maybe you want to change career, switching direction towards something more meaningful and fulfilling.

Whether you’re looking for a new job or considering a new career direction, this month’s article has plenty of practical advice to help you.

1. Get Clarity on Your Direction

A good place to start is by getting clear on your new goals, financial needs and current skills and abilities. Grab a pen and some paper and take some time thinking about your responses to the following questions.

  • What are my core skills and strengths? Am I using them to their fullest in my current (or previous) job? Which skills and interests from my previous jobs will transfer over to a new position or field?
  • What new insights or skills have I gained through cancer? Do I want to be able to use these in my job?
  • Have my career goals changed? Do I want to work in a similar job but with more work-life balance? Or do I want to try something new?
  • Do I have the required skills for a new career interest? Will I need to retrain? How will this impact me financially?
  • Do I have the stamina to take on something new? Do I need to consider the impact of any long term side-effects from treatment on my ability to work?

2. Update Your Resume

The next step is to get your resume in order.  If it’s been several years since you last applied for a job, you may need to take into account that resume writing has changed quite a bit in the past decade. For example, the chronologically based resume (listing job titles, companies and dates in chronological order), while still popular, is giving way to a more dynamic skills-based one.   This is good news if you want to work around a gap in your employment history.  For a skills-based resume, you will create a relevant summary of your skills, career accomplishments and career goals and position this directly below your name.  You should aim to provide an example of an area of accomplishment related to each specific skill.

Pro Tip: When it comes to including employment dates, don’t include months in the dates, only years. This helps narrow the work gaps.

3. Develop Your Network

Make a list of everyone you know who is currently working in your industry or the industry you’d like to be in. Take a strategic approach by setting achievable goals for the number of people you want to connect with every week. Reach out to them and tell them about your plans to find new work or change career direction. Ask them to keep you updated of any new job openings and leads. Hiring managers are more willing to consider you for an interview after a personal recommendation.

Pro Tip: When it comes to building your professional network there’s no better tool than LinkedIn. LinkedIn multiplies your existing personal and professional networks by making the connections of your connections available to you at the touch of a digital finger.

4. Optimize Your LinkedIn Profile

Your LinkedIn profile is the cornerstone of your professional brand online. While you may already have a profile on the platform, is it optimized for a job search?   LinkedIn profile optimization simply means that your LinkedIn profile is fully updated to maximize your visibility on the platform. Everything you do on LinkedIn begins with your profile. Yet many professionals still treat their LinkedIn profile as little more than a place to park their resume and promptly forget about it.

You won’t be effective at LinkedIn networking if your profile doesn’t entice people to get to know you. Here are some quick tips to optimize your profile (for a step-by-step guide with more detailed information, click here).

  • Make your first visual impression count by displaying a high-quality professional photo.
  • Adding a background image directly behind your photo will help brand your profile. Think of it as your professional billboard.
  • Create a strong professional headline. This is a critical step because your professional headline is not just highly visible on LinkedIn, it’s also searchable by Google.
  • Nurture your LinkedIn relationships through regular engagement. This is not about making large numbers of contacts; rather, it’s about making meaningful connections.
  • Join industry relevant groups. Job openings are often posted by recruiters in industry groups. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
  • Become an active and engaged user. When you log into LinkedIn, notice each time who shows up in your home feed. Most likely you will see the same few people. These individuals are getting more visibility because they are more active. If you make the commitment to become more active in your network, you will increase your visibility
  • Be strategic about when you’re active on LinkedIn. As a general rule, LinkedIn users are most active right before and after work (7–8 am and 5– 6 pm), as well as during lunch time.

Pro Tip: Don’t be afraid to use social media to your advantage: if you know the hiring manager’s or recruiter’s name, add them on LinkedIn.

5. Mind Your Digital Footprint

Employers are increasingly carrying out social media checks on prospective employees. Anticipate this by googling yourself to see what turns up.  Here is where a professional profile on LinkedIn can be enormously helpful to present the best impression. Because of the way Google’s search algorithm works, an optimized LinkedIn profile will frequently show up in the first few places of a Google search for your name.

While LinkedIn is an asset, other forms of social media may harm your search for a new job. Sharing personal information about your treatment through a blog, Instagram, Twitter or Facebook is publicly searchable by potential employers.  Many of us turn to social media sites and blogs to keep our families and friends updated on our progress and to seek support during cancer treatment.  But when your focus returns to work, you may not want your employer or prospective employer to know of your cancer history.

Pro Tip: Take some proactive steps to protect your privacy online.  Set privacy settings on things like Facebook so that nothing can be seen by people who aren’t “friends” (including pages you are a fan of – an often forgotten detail). Delete what you can from your postings on Facebook and other media that talk about your cancer. Set up a Google Alert to monitor mentions for your name.

6. Handling the Job Interview

A job interview is stressful at the best of times, but when you’re anxious about handling the question of cancer, it’s doubly so. Sixty-one percent of cancer survivors looking for a job said they fear disclosing their cancer diagnosis will negatively affect their chances of getting hired.

Rehearsing what you plan on saying ahead of time greatly reduces any anxiety you may feel. The more prepared you are before the interview, the more relaxed and at ease you will appear during the interview. Draw up a list of potential questions and practice your answers.  Accentuate the positive. For now, put aside your worries about how to explain the gap in your resume and spend some time focusing on why you are the right person for the specific job that you are applying for. List at least ten great qualities and skills you have and ask friends and family to help you brainstorm more. Try to find a willing friend or family member who will role-play the interview with you.

Remember you don’t have to disclose your cancer history either on your application or during an interview. The Americans with Disabilities Act prohibits employers from asking job applicants about a disability (this includes cancer) before offering them the job.  However, you may decide you want to be upfront about a work-related absence. If this is the case, you can deal with it by briefly explaining you had some time off work for a health (or family) related reason, but that’s behind you and you’re now looking forward to re-joining the workforce. Keep it simple, stick to one sentence or two and don’t be tempted to digress. Then switch the direction of the questioning back to your skills and qualifications for the job.

Pro Tip: Do your research before going into an interview. By showing off your knowledge of both the company and the industry, you are conveying to the interviewer that you are still up-to-date even if you have been absent from work for a period of time.

7. Considering a Career Change

Cancer changes your outlook on life.  Alongside an increased awareness of the preciousness of time, you may also have decreased tolerance for spending time on meaningless tasks. Many cancer survivors, my own self included, have felt a calling for more meaningful work after their treatment has ended.    I’d like to finish this back-to-work series by sharing the stories of three such people who have used their cancer experience as a way to help others and forged new careers in the process.

Jennifer Elliott was a pre-kindergarten to elementary school age music teacher before being diagnosed with bilateral synchronous breast cancer in 2014. Since her diagnosis, her focus has shifted to patient advocacy.  “My advocacy began when I realized that my access to industry trained people, thanks to where I live and who my friends are, was impacting my care in a positive way,” said Jennifer.   “That made me angry, because we should all have equal access to quality care.  I’m now applying to graduate degree programs in public policy because, as I’m advocating for breast cancer survivors I’ve learned that all the things I’m advocating for are impacted or dictated by policy and if I want to have the broadest impact I need some policy skills and training.”

Terri Coutee was focused on a life-long dream of completing a Master’s program in teacher leadership when she received news of her second breast cancer diagnosis. “The diagnosis was the catalyst to evaluate my professional career,” explained Terri.  “I had to focus on my treatment and major surgery over a period of seven months. This gave me time to re-evaluate, research, and refocus. I learned less than 25% of women and men were not being given their options for breast reconstruction after mastectomy. As a life-long educator, I realized I could educate those affected by breast cancer and learn from my experience. A blog about my successful breast reconstruction experience led to opening a non-profit Foundation to educate a global audience through social media, attending medical conferences, and making as many personal connections as I could to assist others through their own journey. The need is endless because we haven’t found a cure for breast cancer, yet. Until we do, I will continue to educate and provide resources for the very best medical care for others faced with mastectomy.”

At the age of 51, Chris Lewis wasn’t looking for a career change. “I was working for myself and was at the peak of my earning power,” he said. “Then a poor prognosis of incurable blood cancer and my life was turned upside down. I have since had many years of complex treatment meaning I could not return to employment of any description. As my survivorship moved from months to years I needed a purpose. My body was in bad shape but I still had a business mind.”

Unhappy at the poor resources and help for people living with cancer, Chris took to the Internet to voice his displeasure, leading to him running his own successful website Chris’s Cancer Community.  “This led to me becoming a global expert speaker and writer”, said Chris. “I am self-taught in social media and an award winning writer. As a patient advocate I speak at many high profile conferences. Cancer has taken a lot from me, but has shown me a new way of life I would never have experienced. The big bonus is the incredible people I get to meet and talk to daily. It seems even at my age I have found a new career!”